Today is Apraxia Awareness Day. Everyone has a cause that is special to them. Cancer, The Heart Association, Lupus. While those have touched me and are important, Apraxia is my cause. First, my baby boy has been dealing with it his whole life. Second, unlike a lot of other causes, it doesn’t get a lot of press.
According to apraxia-kids.org- Childhood Apraxia of Speech (CAS) is a motor speech disorder that first becomes apparent as a young child is learning speech. For reasons not yet fully understood, children with apraxia of speech have great difficulty planning and producing the precise, highly refined and specific series of movements of the tongue, lips, jaw and palate that are necessary for intelligible speech.
From what I have read and what I was told it isn’t something you “get over” without therapy in more serious cases like my son. There are a lot of variables that figure in to the outcome for apraxic kids.
He was 18 months old and not talking at all. Nothing. I called early intervention and they came out to evaluate him. While he had a large deficit, his disability wasn’t high enough by a small percentage to be taken in that program. Luckily our insurance covered speech therapy. Lots of speech therapy.
In the beginning, it was 2-3 times a week. Then he was diagnosed with Sensory Possessing Disorder. That increased our therapy visits by one a week. Our journey may have been complicated by a serious digestive problem he has.
Life with him was hard. He said momma at 4. I love you was maybe at 5-6. He is 7 now. The crying fits were horrible. He cried so much.Breakfast was especially hard. But we overcame. Well, he did. He went to speech, and most of the time he was good. He tried and he worked. I am so proud of him. He had/ has great therapists to help him, but in the end, he had to do it. And he has.
While he has made such progress (we only go to therapy at the school once a week.), his struggle is not over, and may never be. His therapist may dismiss him from speech in the fall, if his progress continues. But is it over? No. In more extreme cases like my boy, it affects phonics and reading abilities. He struggles with reading and memorizing phonics. He has trouble remembering the abc’s in order. But remembering where we started 6 years ago, I will take it.
I have done my research and have bought the appropriate curriculum for his needs. We will make it. And, I swear, there were days I knew we weren’t going to make it.
I just want parents who may have a child with speech issues to be informed. to be an advocate for your child. I have been blessed with good therapists who have become friends. But listen to your gut. No one knows your kid like you. If it feels wrong, it probably is. Research (but be careful what you believe. I was terrified after researching his diagnosis. The internet can be bad.), be an advocate, and speak for the voiceless. Try (and this is hard) to be patient with your baby who throws fits, and screams because they can’t say they like oatmeal but not toast. And take care of yourself. An hour away from the screaming is sometimes necessary. Build a good support system. That will save you.